Theresa Quick was tired of looking over her shoulder. At 28, she had spent too many years waiting, wondering and bracing herself for the day breast cancer would catch up with her.

She was 6 when her mother, then 36, had surgery, radiation and chemotherapy for breast cancer. She was 22 when she lost her to ovarian cancer. Both her maternal and paternal grandmothers died of breast cancer before she was born. Two second cousins had treatment before they reached middle age.

“Breast cancer was always a big part of our lives,” says Quick. “It’s been this thing hanging over me. I’ve always just assumed that I’m going to get it.”

Eighteen months ago, she received ominous news: A genetic test confirmed she carries the BRCA1 gene mutation, putting her lifetime risk of developinkng breast cancer at 75 per cent and boosting her risk of getting ovarian cancer to at least 40 per cent.

She wasn’t prepared to live with those odds.

Which is why she decided to have both her breasts removed: Last Nov. 8, the picture of health, Quick underwent a prophylactic double mastectomy at Women’s College Hospital. The four-hour surgery, which involved the first stages of breast reconstruction, has reduced her risk of breast cancer to about 4 per cent — less than the one-in-nine chance for the general population.

“Now, I get to live the rest of my life without an expiry date lingering over all the things I want to do,” she says. “That is huge. You don’t realize how much psychological impact that has until all of a sudden it’s not there any more.”

Quick is single but in a relationship and hopes one day to have children. She plans to have her ovaries removed in her late 30s.

Preventive breast-cancer surgery is not new. What is new is that it is now an option more women are considering — thanks to better access to genetic testing to identify those at risk and advances in reconstructive surgery that restores breasts to almost their original shape and size following mastectomies.

Fewer than 10 per cent of breast cancers are caused by an inherited gene. And only about one in four of those women aware they carry BRCA1 or BRCA2, the other known genetic marker, elect to have their breasts removed. Those numbers are expected to increase as new generations are tested, more breast-cancer genes are identified and there is more widespread conversation about choices.

There were 100 to 120 prophylactic mastectomies performed in Ontario last year, half at Women’s College Hospital, the hub for research in the field. That’s a small percentage of total mastectomies performed in the province — roughly 3,300 in 2010/11 — according to the Canadian Institute for Health Information.

No one knows
that better than the Quick sisters, Theresa and her sister, Laura, 26.

Their mother, Mary, had her blood tested at Princess Margaret a few years before she died to find out if she carried BRCA1 or BRCA2. But as an employment lawyer, she had reservations about what the information could mean for her daughters’ future jobs, health care and insurance.

So she sealed the results — without ever knowing what the test revealed — and left it in their hands. She died in 2006 at age 52.

Theresa was 24 when she first found benign lumps in her breasts and began having regular scans. By the summer of 2009, she had convinced Laura it was time to unseal their mother’s test. It was something they had always agreed to do together. They met Demsky in a conference room to open the envelope.

The results were negative. The sisters were skeptical, given their family history and had the tests repeated using other blood samples preserved from their mother. This time, it was positive: Theresa and Laura each had a 50:50 chance of being carriers.

Soon after, Theresa met Demsky and had the simple blood test required for DNA sequencing to check for the abnormal gene. When results came back positive a few months later, her next move was, she says, “a no-brainer.”

“I’m not the type to wait and see. I need to face things straight on.”

She booked her surgery.

“It was a very pragmatic thing for me more than an emotional thing, mostly I think because I saw what cancer did to my mom,” she recalls on a recent morning in her downtown condo, as cockapoo Archie nuzzles her on the couch.

Quick, who inherited her mother’s analytical mind, works in public relations as an account executive and vice-president at The PR Department in Toronto. She said she is telling her story because it will help other women in her position. When she weighed the pros and cons of preventive mastectomy, she didn’t know a soul who had gone through the trauma of genetic tests and surgery. It would have helped enormously.

What she would tell any woman who is considering the procedure is that she has no regrets and indeed feels a great sense of relief.

She is also pleased with her appearance now that reconstruction is almost complete. An oncological surgeon removed all the necessary breast tissue and fat through two arc-shaped incisions below her breasts. Tissue expanders inserted by the plastic surgeon then stretched the skin and chest wall through a series of saline injections over the following two months. This spring she’ll have a follow-up surgery to insert implants through the two incisions.

She is close to her original size and shape but she says there is nevertheless a sense of loss. She has no sensation in her chest and reconstructed breasts don’t feel natural; they are much harder than implants done for cosmetic purposes and inserted beneath tissue.

Friends and colleagues were supportive. But it was hard for many to understand. “It’s so dramatic, it’s so extreme,” was a common reaction.

To Theresa Quick, however, it was neither dramatic nor extreme.

Cancer has never been hypothetical. Her childhood memories of the hospital are vivid. So is the day she burst into tears because Mummy “looked like a boy” after cutting her hair short in preparation for losing it during chemotherapy.

Mary Quick talked openly to her daughters about the need for vigilance. They saw her scars and watched her go from one treatment to the next. Theresa was 17 and Laura was 15 when their mother was diagnosed with Stage 4 ovarian cancer, shortly after their parents separated. She was given five months to live. She survived five years.

Theresa turned down a scholarship to business school at Queen’s University, her mom’s alma mater; she chose Schulich School of Business at York University so she could live at home. Laura attended University of Toronto so she could spend time with her mom.

Mary’s final months were spent in their Etobicoke home, where she was cared for round the clock by her daughters.

Laura is midway
through medical school in Ireland. She and Theresa look alike, sound alike and are the same size, right down to their shoes.

And yet her way of dealing with breast cancer risk is different and so are her circumstances. She waited a year after Theresa was tested before doing so during a visit home last summer.

“It was really scary, to be honest,” she recalls during a Skype conversation from the University of Limerick. “I needed to get my head around it.”

Demsky called her in October with the news that, like her mother and sister, she carries the BRCA1 mutation.

Today, almost five months later, she is still wrestling with her options.

She doesn’t have access to the same health care and screening available in Toronto, and is in a relationship that will be affected by whatever she decides. She has two more years of medical school without a break.

None of her choices is without consequences.

“I feel like it’s just not fair that my best option is to go in for surgery and have a big part of me taken off.”

She and Theresa talked every day during Theresa’s six-week recovery. Their mother was a fighter, she says. Surgery is probably what she would have chosen too.

“Whatever decision I make, I am 100 per cent behind my sister’s choice. I think she was so brave.”

Demsky, a genetic counsellor for 13 years, says it’s not uncommon for members of the same family who face the same risks to adopt different strategies.

Theresa Quick made “the right decision for her — it made sense.” That doesn’t mean it’s what her sister should or will do.

Women who test positive
for BRCA1 or BRCA2 have several options: They can have annual MRI and ultrasound screenings; they can choose preventive mastectomy and/or oophorectomy; or have chemoprevention, using drugs such as Tamoxifen.

None comes without risks and side effects.

Most women choose non-invasive screening, says Dr. Steven Narod of Women’s College, who worked on the research that led to the discovery of the two BRCA mutations in 1994 and 1995.

While surgery can reduce risk (as opposed to screening, which manages risk by monitoring), only about 20 to 30 per cent of women choose that option, says Narod, Canada Research Chair in breast cancer and director of the hospital’s familial breast-cancer research unit. Among those at highest risk of carrying the genes are women of Ashkenazi (European) Jewish descent.

Narod believes fewer than 10 per cent of Ontario women who carry the genetic mutations have been identified. Provincial health insurance pays the cost of genetic testing for those who meet the criteria, and covers preventive mastectomy and breast-reconstruction surgery.

Of course, at the same time genetic testing has saved lives it can also devastate them.

A positive test result raises questions and choices that can be overwhelming, says Natalie Witkin, a Toronto breast cancer survivor who found out 12 years ago that she inherited the BRCA1 mutation.

“This literally affects the whole family,” says Witkin, 43, who has daughters 10 and 7. “Your children can be affected, your siblings are at risk. Nothing about it is straightforward.”

Anyone with a parent carrying the gene has a 50:50 chance of inheriting it.

A couple of years ago, Witkin approached the non-profit network Willow Breast Cancer Support Canada ( www.willow.org) and proposed a support group open not only to breast cancer survivors but anyone who carries the gene mutations — a group known as “previvors.”

Almost 30 women attended the first meeting in 2008. Today there are four groups in the GTA.

Witkin is director of Willow’s In Our Genes program, aimed at anyone with a family history of cancer. Last month, the group published a booklet, Breast Cancer in the Family, available online.

Witkin says the need for support will increase as more people are tested and identified as high-risk.

“My mother was 60 when she was tested, I was 30, but my daughters will be 20.”

Theresa and Laura Quick say whatever life holds for them, they will support each other, just as they did their mother.

Theresa carries a pledge on her right hip — a small black and grey tattoo of a three-cornered symbol called a triquetra in honour of the three Quick women.

“It was always the three of us,” says Laura. “This is just another round of ‘we’re all in this together.’ “

The breast reconstruction show and tell

On a Wednesday evening last October, eight women gathered in a small room at Toronto General Hospital and unbuttoned their shirts.

Outside the curtained doorway, about 200 others filled a conference area as plastic surgeons described the latest advances in breast reconstruction surgery for women having mastectomies.

It was Canada’s first Breast Reconstruction Awareness (BRA) Day, with sessions held across the country, including at four major Toronto hospitals.

But in that small room away from the main action, something unusual was happening. The eight women, who had all gone through mastectomies and reconstruction, were sharing their experiences — and scars — with others grappling with the same tough decisions they had faced.

“Women just want to know what they’re going to look like afterwards. A one-dimensional photograph doesn’t do it justice,” says Natalie Witkin, who came up with the idea for the Willow Show and Tell Lounge, run by the non-profit network Willow Breast Canada Support Canada.

People wanted to know about incisions, breast sizes, how hard implants feel and whether it’s comfortable to lie on your stomach afterwards.

Of course, the “show and tell” wasn’t new. It often happens at cancer events, but in the bathrooms.

“We just gave women a comfortable place to do it,” says Witkin.

BRA Day was launched by Toronto plastic surgeon Dr. Mitch Brown of Women’s College Hospital, who believes reconstruction, which can restore breasts to close to their previous size and shape, can also help women regain a sense of normalcy.

But recent studies show only small percentage of women opt for the procedure, even though it’s considered safe and costs are covered by provincial health insurance. In many cases, particularly for women having prophylactic surgeries, plastic surgeons can begin reconstruction minutes after oncological surgeons have removed all breast tissue.

Most commonly, tissue expanders are put in place and injected with saline to gradually stretch the chest wall and skin to accommodate implants several months later. But new techniques are evolving, including those that rebuild the breast using tissue from other parts of the body.

Theresa Quick of Toronto, who carries the BRCA1 gene that put her at high risk of developing breast cancer, was only a few weeks away from having a preventive mastectomy when she walked into the Show and Tell lounge that October day.

She had talked to surgeons and counsellors and done her research. But there is nothing like seeing, touching and talking with women who have gone through it.

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